Auto Immune hymolyptic aneamia (AIHA)

japlopper

Milly,
You're like me - my counts have slipped a little. I get another check next week, and I've asked them to check my B12 levels again, too. I'm wondering if I'm not getting enough B12 and that's why my levels are slipping. I've been exercising and I'm suspicious that I need more B12 now - although everyone is divided on whether or not you use more B12 when you exercise.

I'll be interested to see what you find out about Cellcept. I know some people who have been on it for ITP, and the big thing, I think was that you're supposed to drink a lot of water with it because it helps ease the stress on the kidneys. If you do get a choice, you might want to consider the Rituxan - everyone I know who's tried it has gotten a good response. If your insurance will cover it, it seems like a good thing to try.

Jill

connie61

Hello Woodmere, my husband has hymolytic anemia. He had knee replacement in May of 2007. His blood was checked before his hospital stay and everything was normal at that time. In June 2007, he had chest pain and had to have a stent put in. He just could not seem to get over the fatigue. So about a month later he went to the doctor because of fatigue, dizziness, weakness and fast heart rate. They immediately sent him to the hospital for a blood transfusion. He was diagnosed as having hymolytic anemia. Since then, he has had 6 blood transfusions. They seem to bring his blood level up a little for 3 or 4 weeks. His blood level ranges from 7 to what it is now is 9.3 He has been on prednisone which he hates. It make him eat so much. His face swells. He can't sleep and he gets depressed that things are not going to get any better. It makes me feel better that he is not the only one. That I can get on the internet and read about the problems others have about this disease because the doctors don't seem to know alot about this disease. They do not know how the patients feel. My prayers are for you and everyone that is coping with this disease. Praying for a cure.

connie61

Woodmere, that is very interesting about the eye drops maybe causing this disease. A drug rep told me that Plavix had been known to cause this disease.

millym

Hi again & thanks jill
im lucky here in the uk most treatment is available free on the NHS(goverment funded health service) so its not an issue in my case. my drs said they had excellent results with other people with my condition on cellcept with minimal side effects and i was a little reluctant to take azothioprine because of risks of hair loss ( ive stacked on weight due to high dose prednisolone, and although im losing it slowly, can deal with being fat but being fat and bald when immediate life or death is not an issue was too much to bear!) so ive started cellcept & it if does not help i can try the rituxan but fingers crossed.
my dr said the patients he has tried cellcept on before have had min side effects such as headaches & insomnia & minor gi disturbances & after the horrors of high dose pred where i had terrible side effects & the stuff although treated me also debilitated me completely!!! so i think i can deal with the cellcept minor side effects if thats all i get. ive only been on it ( cellcept) for just over a week so i'll let you know how i get on

japlopper

Milly,
Did your hema tell you to drink a lot of extra water? I know someone who was on Cellcept, and they told her to drink alot of water, so it doesn't bother your kidneys so much. Don't know if it's true, but if it is, it's a simple thing to do.

Keep me posted on side effects and results. Cellcept is a very real option for me next if things go south.

Jill

millym

hi again
no he didnt but as im an icu nurse i think they expect me to read up or annoy the pharmacists & drs i work with (which i do) i have always drunk loads of water & esp since i got sick as i thought it cant be good with all those red blood cell bits & pieces passing through my kidneys (dont want kidney stones!!) but thanks for highlighting the importance for me.
im up to 500mg cellcept twice a day going up to 750mg twice a day tommorow i think the target is 1g twice a day. i havent had any adverse effects apart from maybe a little bit of sleep disturbance but nothing major so fingers crossed. im going to haem clinic next week so will be interesting to see what my hb's doing.

ezio

Hi Folks,
I was diagnosed with idiopathic, Coombs negative AIHA three years ago. Initially, Prednisone and Danazol brought my red counts back to normal, then these steroids stopped working. I've tried Cyclosporin, Azathioprine, and had twelve Rituxan infusions, none of which worked at all. I'm in my third week of taking Cellcept, had blood work last week, and am happy to finally report that my counts are going up, from 7.4 to 8.6, and from 25.2 to 26.8... Baby steps but going up I'll keep you posted on future results. All the best to everyone dealing with this condition.
E

japlopper

HI E!
Have you noticed any side effects from the Cellcept? And would you say you prefer it to the Pred?

that's very disheartening to hear that Rituxan didn't work for you - there are several people on this board who've had enormous success with it.

Jill

ezio

Hi Jill,
No side effects, other than possibly occasional mild nausia. Hemoglobin has plateaued lately at 9.2 - 9.4 but the good news is my bilirubin is decreasing... Maybe a sign of less hemolysis. Amazing how much better I feel at 9.2 vs. 8... Still hoping for 12
E

j1107

New to boards, looking for info. In Jan got case of warm bodied hemalytic anema with levels as low as 6.8. Large doses of Pred 40 bid, danizol and 200 mg direct infusion, B12, folic acid brought levels up. While weanng off of Pred 10 bid I had a relapse. Large does of steroids again brought level up. However, I cannot live on this level of Pred. Started 4 week Rituxan protocol.
Will such a short protocol help? What is the function of the Rituxan? How can I tell if the Rituxan is working? What kind of remission can I expect?
Thanks for all the help.

millym

hi
ive now been on cellcept for a few months 750mg twice a day. my pred has been weaned off completely my Hb has been at 13 for a few months and im showing no signs of haemolysis! yay long may it continue.ive had levels done & my dose may be reduced next clinic visit.

jalopper the only side effect ive noticed with cellcept is occasional gut pain (nothing major) and this just doesnt compare with the horrendous side effects i had on high dose pred - huge weight gain,fat face, growth of facial hair - aaargh, insomnia, severe joint pains, a constant 'high feeling' , gross oedema ( swelling)of my legs just to name a few. the pred turned me into a cripple- i couldnt even walk more than about 20m without getting bad pain in my feet & knees -nightmare.

good luck to everyone still dealing with this illness and any other q's about the cellcept please ask. im very happy with the drug to say the least!!!